Marfan Syndrome.
Last updated Thursday, December 23, 2004
CopingStrategies for coping Living and coping with a chronic disability, regardless of its severity, is a challenge for most people.
If you or your children have Marfan syndrome, know that there are many ways to adjust and to cope with its symptoms.
Because Marfan syndrome is hereditary, most couples express the
following concerns about having children. First, will the child be
affected? If so, how seriously? Second, will there be problems in pregnancy
and childbirth? Third, is prenatal diagnosis available? Genetic
counselors are especially helpful in answering these questions and
discussing a family's concerns. Couples who are planning to have
children, as well as couples who already have children, can benefit
from genetic counseling.
When parents first find out their child has Marfan syndrome, they and other family members
may experience feelings of denial, anger, blame, depression, or guilt.
These are all normal feelings until the family learns to accept the
illness. Acceptance, however, often takes time and support. Discussing
feelings and concerns about Marfan syndrome with your family, a friend,
doctor, or genetic counselor can help you and your family adjust more
easily. Some family members benefit from discussing their concerns with
a medical social worker, counseling psychologist, or clergyman. Many
people find support in sharing information and concerns with others who
have the disorder in their family.
Children who have Marfan syndrome may also have a difficult time
adjusting to it, especially at first. They, too, may react with
feelings of fear, anger, or depression and will need support from their
family, friends, doctors, and teachers.
Some children may face adjustment problems due to their excessive
height and poor eyesight. If they feel self-conscious about their
height and thick glasses, they will often look to their parents and
other family members for acceptance and reassurance. Remember too, that
children's needs and concerns may change depending on their age,
personality, and school environment.
If you have children with Marfan syndrome, remind them to be
careful, yet encourage them to live as normally as possible. Children
may need special protection, but they also need to play and have
friends. Involve your children in activities they can safely enjoy. If
they cannot participate in sports as actively as they wish, encourage
them to develop other talents.
Discuss your children's needs with their teachers. Advise teachers
that Marfan syndrome does not affect intelligence, but that visual
problems often interfere with progress in school and that may affect
the child's social and psychological adjustment. Ask teachers to adjust
curriculum and special activities as needed. Some children having
adjustment problems may benefit from short-term support counseling. Ask
your doctor for a referral. Children can also gain support by talking
to other children of the same age who also have Marfan syndrome. The National Marfan Foundation can help locate children who are willing to talk with others about their disorder.
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